Crohn's Disease

threads merged. Thanks Faith.

there'a good resource forum called 'healingwell', looke like it's located in USA.
They have forums for loads of illnesses and one of them is Crohns.

I've been officially diagnosed over 3 years now.

I was diagnosed mid 2005 with Crohns Disease after a Colonoscopy and half a year
of hell.
I had to get another colonoscopy January 2006 as things were not improving AT
ALL.
And it turned out there was no improvement in the crohns.
All I had been given was Pentasa and the steroid tablets (deltacortril), so the inflamation and bld was stopped, but the running to the jacks several times a day and the pains etc... was still a daily occurance

Since then I was given imuran tablets (immune system suppressant)
which caused severe nausea, I could hardly keep anything down, and the
thought of any food was a complete turn off.
So they added Maxolon tablets (anti nausea) to the mix.
Two weeks later I had to phone the specialist and tell him I was stopping the imuran, as I had nausea and extreme tiredness. I was walking around like a zombie, completly exhaused and never fully alert.
I have to point out, I was told this was an unusual reaction to Imuran.


I had a bone density scan and was confirmed with Osteopenia, due to all the steroids (in one 52 week period, 1 year, I was on the steroids for over 36 weeks)
[Osteopenia is the term used for bones that have become somewhat less dense than normal,
but not as severe as in osteoporosis. A person with osteopenia is at risk for getting
osteoporosis in later life].
So I was put on Osteofos D3 sachets (Calcium and Vit D3 supplements) and a once weekly
Foxamax Calicum absorber to help with the bones.
These days I take Ideos chewable tablets (Calcium and Vit D3) daily and the fosamax weekly


I was off the Imuran and Maxolon, not even two days, and felt pretty good. Of course the Crohns was still there.
Next were steroid injections (into the vein) to stop the Crohns and finally get it under control?

Next I started Methotrexate 15mg (2.5mg x 6), once weekly and folic acid (to keep white blood cells in order and reduce side effects).

Since then I was on Remicade infusions in the Hospital, these take about two hours for the actual infusion and lots of waiting
I started these in Feb 07

Brfore the Remicade infusions are done they need to do a Manuoux test, this was done a few weeks before the remicade, to check for TB.
This is where they inject a small solution under the skin of the arm (and mark it)
only takes a few minutes and three days later, at the same time of day, the specialist/ doctor checks the location on the arm to see how big the reaction to the solution is.
I've since found out that the Mantoux is normally checked every few hours or something like that.


The 1st the Remacide Infusion
Arrived in the hospital at 09:00
Checked in (with a book to read) and waited
10:30 doctor placed needle in arm (one of the things they place for attaching a drip later)
11:30 Went for chest x-ray, if this not clear they will not give the infusion.
12:00 Lunch Provided, quite nice actually
Saw specialist and given information on things to watch out for during infusion.
15:30 finally got all-clear from x-ray
Remacide infusion started
5mg of Remacide per Kg of weight (I'm 80kg)
400mg total and some saline, all in a small drip bag
Doctor flushed vein (through previously placed needle thing) with a small syringe of saline solution to make sure the vein was ok.
Then the drip was attached.
Two and 1/2 hours later the infusion was finished (fell asleep for a hour), no side effects noted except for a headache and had my tea near the end of the infusion.
Monitored for another hour and went home on the bus, as you're not allowed to drive afterwards.
Will hopefully see improvement in under two weeks.


Asked doctor about stopping the methotrexate after my 4th or 5th infusion (1 infusion every two months) as my wife and I were thinking about having another child and this is too dangerous for the child with the DNA altering methotrexate.
I've been on the methotrexate for 16 months at this stage.

So I went off the methotrexate sept 07
Looks like the methotrexate is out of your system in about a month, but the DNA damage is not corrected for about 6 months after you stop.

So january 08, developed antibodies to Remicade and developed Arthritis, probably as a result of this, but I never got a really clear answer on this.
So am now off the remicade, after 6 infusions, and crohns is getting worse again.

Had to go back on the Methotrexate in Feb 2008.

Unable to change to Humira until antibodies are gone and definately can't go back on Remicade at the moment.

It's now Sept 2008, I've switched specialist and after DNA results and several consults, Have been told I could go on Remicade again or Huimra, but my Rheumatologist (for the crohns arthritis), has strongly suggested not to go back on the Remicade.

I chose to try the Humira, and avoid the complications of antibodies and days off work to get the infusion.

Before starting Humira you need to have no chest infections and have had a Mantoux test.
I've had the mantoux and my chest is clear, so off we go.


The 1st the Humira injections are completed in the hospital, in case you have any problems.
And I have to get the injections from the chemist, using a form from the specialist.
So I've already read up on the Humira injections and had asked for the 'Pens', as these are an automatic dispense pen and easier than an injection. Medicine is kept in the door of the fridge at home, between 2 and 8 degC?

Arrived in the hospital at 09:00, and back out by 12:30
Checked in (with a book to read, I always take a book) and waited
A humira rep arrived and go's through the humira and gives a nice big folder with loads of info to take home.
The nurse demonstrates the use of the 'Pen', with a fake one she has.
and proceedes to show me how to inject my stomach. It's quite easy and not very sore.
I've 4 injections to get, and I do the last two.

I've to wait for two weeks to get the next two injections and then every two weeks it'll be 1 injection.
Your local doc can give these if you're not looking forward to this.

So I'm feeling reasonable, but too soon to tell yet.
Should hopefully only take a few weeks to kick in.